I’ve been involved during the last couple of days in going from link to link, reminding me of my early days at university walking through the stacks and feeling overcome by all the learning that was “out there”, and how small a portion of it I could ever comprehend, and hold, as it were, in a single glance. It seemed, as I went from link to link — a kind of arguing by exponents. And it seemed, as I did so, that it would be impossible ever to come to any kind of sane conclusion which could be securely based on the evidence, on good reasons, on some kind of unquestionable data.
Of course, we do it all the time, day in and day out. We have to make decisions, come to conclusions, express our opinions, argue for our point of view, and we know that some of those conclusions, opinions and points of view are more likely to be correct than others. Otherwise, like Buridan’s ass, we would remain stuck, and life would become a dramatic still life of indecision.
Anyway, to trace the linkages. I began with the United States Conference of Catholic Bishops statement on assisted suicide, did a google search, and found an article by Ann Neumann in The Nation, “Catholic Church Amps Up Its Fight Against Aid in Dying”, copied to NPR and retitled, “Keeping the Right to Die Alive”. This led me back to the article by Ross Douthat that I considered in an earlier post, but also to two critiques of Douthat’s views, one by Kevin Drum, in Mother Jones, and the other by Ezra Klein in The Washington Post. Klein’s piece led me to a 1997 article by Ezekiel Emanuel (brother of Rahm Emanuel, Mayor of Chicago and former White House Chief of Staff) in the Atlantic Monthly. It might have stopped there, except that, this morning, in the Globe and Mail there is a report of an Ontario Court of Appeal decision regarding the removal of life support, and the trumpeted success of the Euthanasia Prevention Coalition, which intervened in the case as an interested party, and is now out some $17,000 as a result, and is pleading for funds to pay these costs, as well as to pay for intervention in the British Columbia Civil Liberties Association case before the British Columbia Supreme Court arguing the unconstitutionality of the prohibition of assisted suicide provisions in the Canadian Criminal Code. And, at the same time, as I reported yesterday, the news came in that the Swiss government drops plan to impose stricter limits on the assisted suicide provisions of their Penal Code (Schweizerisches Strafgesetzbuch) — a piece of news which oddly does not seem to have been picked up by the big British dailies, and the headline of which has been changed in some papers to “Swiss government drops plan to curb assisted suicide” — which conveys a subtly different message.
The significance of the Ontario Court of Appeal decision is not vital to those who support voluntary assisted dying. It merely states that before removing life support from patients, even if they are considered in a persistent vegetative state, they must have consent from family members. The case is a sad one, since the wife of the man in question, Mr. Rasouli, clearly thinks that he will get better. According to the Globe and Mail report:
As for Mr. Rasouli, he was placed on antibiotics earlier this week after suffering a fever and infection, said his wife, Ms. Salasel. But she says he’s getting better. Some days he will squeeze her hand with his left hand. His left eye is open and looks at her.
“Somebody in his situation wants to be alive,” she said. “Humanity is very important.”
If he is in a vegetative state, this will not happen. Nevertheless, this is not the line which people who support assisted dying wish to draw, although at some point, I daresay, questions of rationing of medical resources would begin to take over if this was a common path for people to take regarding end of life decisions. Assisted dying, as the name suggests, is done in cooperation with the person who is being helped to die. The Euthanasia Prevention Coalition may trumpet, but it is only a victory for those who think that Terri Schaivo’s death was a murder. But that was a decision made by a competent family member who wanted to see the pointless prolongation of his wife’s biological life brought to an end. The implications of the Ontario Court of Appeal’s decision will clearly require study and reflection, but they do not touch the conviction that people have the right to choose how and when they will die.
And this brings me, at last, to myths about assisted dying, since this is the main theme of Ezekiel Emanuel’s Atlantic Monthly essay, “Whose Right to Die?”, linked by Ezra Klein at the Washington Post. This is essentially the same article published in Linda Emanuel’s edited volume of essays, Regulating How We Die: The Ethical, Medical and Legal Issues Surrounding Physician Assisted Suicide (Harvard University Press, 1998). In this article Emanuel addresses what he calls myths — four of them – based on circuit court decisions, and the assumptions they made about the actual or likely circumstances surrounding cases of death by active intervention.
The first myth is that it is primarily advances in medical science that have “created unprecedented public interest in physician-assisted suicide and voluntary euthanasia.” Emanuel goes on to provide a brief synopsis of the history of euthanasia, from the Greeks until today, pointing out, amongst other things, that Hippocrates was in the minority amongst Greek thinkers in holding that euthanasia should be forbidden. But then he goes on to the miss the point entirely when he says:
Indeed, rather than creating a perceived need for physician-assisted suicide and euthanasia, advances in life-sustaining technology should help to obviate them.
For, while it is true that advances in medical technology alone has not produced the increased demand for assisted dying, principles of autonomy and informed consent that have accompanied these advances have. Advances in medical technology have certainly increased the number of persons who will die as a result of chronic, degenerative processes which impose conditions of life which are horrifying to many people, but it is the growth of ideas of human rights and liberties, and the increased control that people demand over their lives that have put the focus on the rights of individuals to make choices about how and when they wish to die. Emanuel assumes throughout that the centre of decision-making in medical contexts is and must remain with physicians and other care-givers, and that if the power is given to care-givers to decide about matters of life and death, then there are dangers of scale that will lead to a routinisation of death, to the point that it will become a convenience, and might then be used indiscriminately to save money or to substitute for the very challenging options involved in caring for dying patients.
But it is the very indignity of the conditions under which this care is often provided that leads some people to seek aid in dying. Emanuel himself gives a graphic account of the conditions which many people, reflecting seriously on the trajectory of their own paths towards death, want to avoid by receiving aid in dying, or at least to have as an option chould conditions become, from their own point of view, intolerable:
Providing the terminally ill with compassionate care and dignity is very hard work. It frequently requires monitoring and adjusting pain medications, the onerous and thankless task of cleaning people who cannot control their bladders and their bowels, and feeding and dressing people when their every movement is painful or difficult.
This is very candid, but can he not see that there are many people who might find being kept in such conditions not only painful, but undignified, repulsive and intolerably cruel? Hats off to all those who provide selfless care to people in such conditions, but is it right to force patients to undergo such trials if they choose to die without the pain, the indignity, and the squalor and stench of suppurating wounds, uncontrolled bowel and bladder functions, and the instinctive disgust that we feel at this kind of disorder.
In her book, The Dying Process, about her field-work experiences in an English hospice, Julia Lawton has a chapter on inpatient hospice care entitled “The sequestration of the unbounded body and ‘dirty dying’.” She points out that the word ‘pallium’, from which our word ‘palliative’ derives, originally meant to cloak, to hide, conceal or disguise (144), and she suggests that this meaning of the term “is most salient in understanding the contemporary role of hospices.” Doubtless, the best of care, within the capacity of modern medicine to provide this, is provided in hospices and by palliative care wards in hospitals, but it is here that we set aside “a space within which the taboo processes of bodily disintegration and decay are sequestered,” and thus, as Lawton says, “enables certain ideas about living, personhood and the hygienic, sanitised, bounded body … to be symbolically enforced and maintained.” (144)
These process of disintegration and decay may be sequestered, but they still have an effect both on the dying person and those who actually witness the deterioration and degradation firsthand. So when Emanuel continues with his mythology, and skipping over myth number 2 (which concerns the question of statistical support for assisted dying, and its interpretation) to myth number 3, which addresses the reasons why people choose assisted dying, and stating, as is true, that it is not primarily related to the issue of uncontrollable pain, he interprets the reasons that people give – loss of control, or of dignity, being a burden, and being dependent — as signs of depression and psychological distress. But this is simply to fail to address the person as a person at all, but, as a doctor would, as a medical problem to be solved, thus confirming the dependence and indignity of the patient’s situation, and the official drive to problematise individual self-awareness and personal judgement in medical terms.
Later on, depending on this interpretation of the individual’s sense of indignity, disgust, and dependence in terms of medically treatable conditions, Emanuel says:
As noted, depression, hopelessness, and psychological distress are the primary factors motivating a great majority [of those who request assistance in dying]. Should their wishes be granted? Our usual approach to people who try to end their lives for reasons of depression and psychological distress is psychiatric intervention — not giving them a syringe and life-ending drugs.
But this is completely bizarre! “Our usual approach …,” he says, as though the usual approach is applicable here, without qualification. “Should their wishes be granted?” he asks, as though we are simply dealing with a person’s whim. He suggests that, if assisted dying — though of course he does not call it that — is legalised, death will become routinised, and it will begin to be applied to people indiscriminately, whether they wish it or not, just because their lives are judged not worth living. And, of course, we can see why he says this, because he shows here clearly the kind of dehumanisation that the medical perspective — the independent medical perspective which does not include persons, as agents, with hopes, fears, sense of dignity or indignity, an appreciation of what is consistent with his or her ideals and concept of self, etc. – can reduce people to. In other words, he does not take death or dying seriously as it is faced by those who are dying. Patients for Emanuel, for all his humanity and compassion, are people who are dependent upon the doctor’s or society’s decision, not agents in their own right. “Should their wishes be granted?” is pregnant with this dehumanisation, this reduction of the human to a social or medical problem.
The fourth myth, which I will not address here, is about the success of assisted dying in other jurisdictions. Predictably, Emanuel suggests that there is no basis for this confidence. There is a good reason for Emanuel’s lack of confidence in the practice of euthanasia in the Netherlands, or the proposed law in Oregon — which was under review at the time before the courts — and other experiences with assisted dying in other jurisdictions. He also expresses doubts whether experience in one jurisdiction can be transferred to another without risk, since cultural factors such as health-care provision, economic equality or inequality, may affect the way the law operates. Of course, this is true, but not really to the point, since the laws would be framed with different circumstances in mind. If economic inequality is an issue in a jurisdiction such as the United States, where economic inequality is the greatest in the developed world, this would have to be addressed in any law drafted for those circumstances; and of course the same goes for health-care coverage, and other cultural factors.
But this is not where Emanuel’s problems lie. The fact is that Emanuel does not consider patients as persons in their own right. They are, for him, dependents, subject to the expert decisions of medical professionals. They can stop treatment, or refuse it if they wish, but treatment decisions are up to physicians, and the provision of aid in dying is a treatment decision. And Emanuel does not entertain the possibility of outside input, even from the patient, in such decisions. So, the question becomes one of psychiatric intervention, as soon as aid in dying is mentioned. Emanuel does not once consider whether the decision to die, to escape the indignity of what Lawton calls ‘dirty dying’, to take but one example, may be a perfectly reasonable decision for a person to make, and this failure to address patients as persons vitiates his whole argument. The biggest myth of all is that people cannot make a reasonable choice about the when and the how of their own dying.